This is a story about a teen girl chasing a dream to be a singer, despite being unable to talk…

The first time she heard a voice being used as an instrument, was the day she would mark as euphoric. How hard able bodied people have to work to make their visions come to life, caused her to doubt whether she could dare to desire such a career for herself. Speaking was almost impossible though she was given the tools to sing words by hitting letters on a keyboard. She knew with determination, practice and patience she could, at least, try. A challenge she embraced and will tackle greedily.

Nothing vanishes without questioning Merlin’s participation in the disappearance. He never admits to wrong-doing, but instead greets the attention with purrs. Even dog lovers fall under Merlin’s spell, charming the most biased minds to rethink what they had assumed true of all cats.

Merlin is unusual because he plays fetch and follows his favorite humans around with devotion. If you don’t like cats it is because you have not yet met our Merlin.

But if you ever lose something, don’t blame Merlin. He had nothing to do with it.

Ariane: What should we start our day with? German, a blog post, general writing, fiction, poetry or something else?

Emma: Just start with blog post.

A: What would you like to post about this morning?

Emma: How about the topic: Knowing many things, but having no one believe you are able to understand.

Ariane: This is a great topic! Do you want me to say anything or keep quiet so you can continue?

Emma: I will continue.

For many years this was the title of my life. It was long hours bloated with mindless screams of nonsensical searing memory words that no one understood the significance of. The feeling of pleased joy when another believes, and then astounds the non believers by interacting with their knowing, is like beams of brilliant light shouting through the dreary darkness. Diving heavy waters it cannot be described, but the word coming closest is love, and to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught. This might help the misunderstood.

Ariane: Wow, Emma, that’s really beautiful. What else?

Emma: You can add commentary now.

Ariane here adding commentary, which is a little like being asked to perform after The Rolling Stones just rocked the house…

I am always struck by Emma’s words. It is the force with which she writes and the compelling word choices she makes that convey a depth of emotion, an intensity and complexity of feelings, as well as insights that make me stop and reread her words over and over. This paragraph took about forty-five minutes for her to write, not because she edited or had to go back and rewrite, but because that is how long it took for her finger to locate the correct key one letter at a time.

“Nonsensical searing memory words…” I so want to know more about this. Does she mean the often repeated sentences that are about the past, the words I once assumed were simply memories thrusting themselves front and center? A kind of Möbius strip of thought, like an infinity symbol wrapping around and around itself? I have learned to reside in the unknowing, the discomfort of being unsure, the scratchy realization that I cannot ever truly know, though I can make guesses and then ask if these are correct. I no longer assume words spoken are meaningless or simply memories or are scripts that are being blurted out compulsively and without thought. I’ve written about these bridges before ‘here‘. Those words and sentences that are full of meaning, but whose meaning is not immediately apparent to me upon first hearing.

“… that no one understood the significance of.” I will ask her about this later. She used the past tense and that makes me hopeful that we are not continuing this kind of awful misunderstanding. “…beams of brilliant light shouting through the dreary darkness.” Who among us does not want that feeling for those we love? Is this not what love is? Connection with another?

“… to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught. This might help the misunderstood.”

Those who think being silent for an hour or two will give them any real insight into what it is like to not have words readily available, either by writing or speaking, cannot possibly understand. We must shift our thinking beyond the hour or two, beyond the day, beyond a month, but instead try years. Years of opening your mouth to speak, but having words tumble forth that are not what you intended, or saying something you intend only to have it misunderstood, or repeating a memory because it conveys so much that is relevant to the NOW only to be asked to discuss more about that particular memory and not what it signifies, it’s deeper meaning. To say words, to write words only to be told you do not understand metaphor. To reach out in vain to connect with a world that continually turns its back or mouths that smile with faces flooded with fear, or superiority or judgement or intolerance or disgust.

End of commentary.

Ariane: What sort of image should we put with this post?

Emma: How about a photo of the two of us. Daddy can take it.

Ariane: I was thinking we could title this post: “Knowing Many Things” and the Impact of Disbelief From Others. What do you think?

There were few things that led us more astray than the idea of autism being a developmental delay. Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan. (This post is not about Stanley Greenspan or his method. His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal. The private hell of regret is a cruel place to linger. Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.” In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell. Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood. Because people assumed she spoke what she intended and meant, she was penalized for the words she managed to utter. “Do you want to go fast or slow?” “Do you want to stop or go?” “Do you want to open the door or close it?”

Again and again the video shows us making assumptions about her actions. We assume she has no interest in engaging. We assume she doesn’t want to spend time with us. We assume she is “in her own world.” We make assumptions and we behave according to those mistaken beliefs. We believed each word was a milestone, paving the way for more language acquisition. We believed it made sense. Lay the foundation, create a strong base of words for more to follow… Use your words, use your words, use your words…

The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed. This idea of a developmental delay bled into every single aspect of her being. It was believed that her speech was delayed, as were her fine and gross motor skills. Therapies were structured around this concept. All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six? At the time we didn’t question any of this. Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.

As it was, we did not know. We listened to the many professionals we consulted. Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter. It never once occurred to me that maybe, just maybe what she said was not what she intended to say. It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider. We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma. Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing. Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:

Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004. The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between. It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else. One day I hope the professionals parents are introduced to will be Autistic professionals.

My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”

My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”

Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”

So what are the consequences of believing autism is a developmental delay?

Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal). It meant pursuing all kinds of therapies that never questioned the push for spoken language. It meant not considering AAC devices, because she “had language.” It meant encouraging my daughter to “use your words.” It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught. It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.

There are so many things Emma can do, that I cannot. Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it. My daughter amazes me every, single day. As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!

Four mornings a week Emma begins the day with a Skype call with a professor in New England who is a bio-chemist. We call him Dr. C on this blog. They have a close relationship and their conversations flow easily between them. I am very much the observer most of the time.

This is a sample of one of their more typical exchanges:

Dr. C: So if water were linear and not bent what effect would this have on life on Earth?

Emma: Hydrogen would not be able to find connections to create networks, life as we know it could not be.

Dr. C: Right, so there would be no dipole or tiny magnet, thus water would not align with a + or – side….

The session before this one, Dr. C asked Emma, as a homework project, to construct a Benzene (C6H6) model, which Emma then did. It looks like this:

Benzene

The final piece of the homework assignment was to draw the corresponding Lewis Bond Structure. This proved much more difficult and took about five attempts before she drew the structure below. (It is awesome and fabulously impressive!)

Lewis Bond Structure

The Lewis Bond Structure is basically a replica of the actual three-dimensional model, so much so that you can literally place the model on top of it and it will pair up. While making the molecular models of things like water, ammonia, methane and carbon dioxide are now fairly easy for Emma, drawing the Lewis Bond Structures are not and it reminds me of a similar problem that writing, handwriting and to a lesser degree typing presents.

I would love to hear other people’s thoughts on why this might be so, but watching Emma cheerfully putting together these models is absolutely fascinating. And it makes me wonder if this isn’t a key to better understanding how teaching methods might take a page from organic chemistry…

If one thinks in a more three-dimensional way, does it then follow that trying to write, formulate the words to correspond with the thoughts, would present a whole series of challenges? Doesn’t it suggest that this is more than a “word retrieval” issue? I’m wondering if there even IS a word retrieval issue, (I plan to ask Emma later) but instead there’s a spatial issue presenting itself as non word based and therefore very difficult to transcribe.

Emma has been interviewing various family members. So I wasn’t surprised when she wrote that she wanted to conduct another interview. Except this time she wrote that she wanted to interview me. This is part one of that interview…

Emma: What sparks your imagination more? Words? Pictures? Music?

It depends on the situation. I have been inspired and moved by all three at various times and can think of examples of each sparking my imagination. If I had to put them in order of most moving and inspiring, I would have to say visual, whether experiential as in scenic or static pictures, painted, photographs, sculpture, visual art. But even as I say this I’m thinking of music that has brought me to tears, and literature and poetry that completely captivated, even non fiction writing, particularly memoirs have completely enthralled me. Each has inspired and sparked my imagination. I don’t know that I can choose!

Emma: Who do you wish you could have known and why?

My grandfather, your Great-Grandfather. He is the one your granma, my mother speaks so highly of. It would have been nice to have had the experience of knowing him. He was also an extremely ambitious, smart and I’ve been told, fascinating man who lived a complicated and unusual life. I would have liked the opportunity to have interviewed him the way you are interviewing me.

Emma: What taught you more about life – notable happiness or terrible suffering?

In a strange way, both as they are both great teachers and I’ve experienced large doses of each. I only wish I was a faster learner so the suffering didn’t have to go on for as long as it did.

Emma: When were you decidedly happiest and when were you easily the most unhappy?

The most difficult time in my life was the years when I was bulimic. I felt as though I was watching life pass me by as I remained stuck in my obsessive-compulsive addictive behaviors. It was a terrible time of feeling I was betraying myself on a daily basis and couldn’t stop, though I wanted to more than anything. Sadly that period lasted for about 22 years. That’s an awfully long time to be so unhappy.

This period of my life is by far the happiest. I have learned and experience daily the power of gratitude, friendship, humility, family and the gift of giving back. I am so grateful for the many gifts I’ve been given – Daddy, N. and you, extended family and friendship. I have so much love in my life. I am extremely fortunate. Gratitude encourages misery to withdraw. People say it’s harder to talk about unhappiness, but I have found the opposite to be true. Misery came easily to me. Happiness I’ve had to fight for and once I caught slivers of it, I wasn’t willing to let it go.

Emma chose this photo of me to accompany her interview (I figure since I chose photos of Emma throughout her childhood, it is only fair that she now choose the photographs posted on this blog.)

Over the past few years I’ve written about presuming competence as I have come to understand it, ‘here,’ ‘here,’ ‘here,’ and ‘here‘. Over the years my definition continues to shift or, perhaps more accurately I should say, my ability to practice presuming competence continues to shift. I still grapple with whether I am going far enough when I presume competence, though the simplest definition, is also the best one, which is that we presume all human beings are capable of learning if given the right supports and accommodations. But many want to know what that means for a specific person they know or are working with. What are those supports and accommodations?

There are a couple of universal things I have found extremely helpful. (I’m hoping others will add what they’ve found universally helpful as well as specifics that may be particular to just one or two.) The first is being respectful of the person and speaking to them as one would speak to any human being regardless of whether they use spoken language or not. It may take some getting used to, because unlike someone who uses spoken language easily, you may not get a spoken reply, or you may get a spoken response that you cannot make sense of. Either way, I have found, speaking to my daughter (and I’m now talking about before we knew all that she knows and before she was typing with us) as I would any person her age, was critical. Explaining to her what was going on, what was going to happen next, what we would do if something we expected to happen didn’t, and including her in any and all conversations that were taking place in her presence, has been key.

In situations where a meeting is occurring, as might happen during an IEP meeting at school or with a team of therapists or with a doctor and nurse, I have found the single best thing I can do is include her in the conversation. (I have made many mistakes over the years, so please do not interpret this as my suggesting I do all of this perfectly without ever stumbling along the way.) So, for example, when we arrive at the place we are having the meeting, I will speak to her as I would anyone her age. I will ask if she’s comfortable in a particular chair or if she’d prefer sitting in a different one, perhaps away from direct light, or one that might have a cushion. Today I always sit to her right so that I can hold her keyboard for her as she types. I make sure she knows why we are all gathered.

If others begin to speak about her (as they almost always do and will) I will then politely remind them that she is right here and has no issues with her hearing. Emma wrote during one such meeting, “My hearing is excellent.” These days I hold the keyboard for her to write questions she may have or to add whatever she might like. As Emma now types with us daily and is more used to this, she will often initiate a question or comment without me asking her if she wants to add something. But in the past, if the people at the meeting continued to speak about her as though she weren’t present or seemed completely confused by my insistence on including her, (which many undoubtedly will) I might then say something about how hurtful and disrespectful it is to be spoken of in this way and that I’d appreciate it if they would rephrase their language.

If the talk becomes an endless list of deficits I would ask them to identify her many talents and assets and point out that constant criticism is unhelpful and destroys self-confidence and self-esteem. If they are silent (as has happened to us in the past) and seem incapable of naming any assets, I would give them a few opportunities to learn and do better, but at a certain point, professionals should be held accountable for what they are doing and how they are behaving. If after several opportunities, they continue to disregard my daughter and seem incapable of treating her with respect and seem convinced that she cannot understand, they do not deserve to be paid for their “services”.

Another helpful tool is a yes/no laminated card. I used to carry one or several around with me and would ask Emma to verify any yes or no question, because she often says “yes,” but means “no”. I found that what she pointed to with the laminated card, was almost always correct, while the spoken answer wasn’t as much. I have since seen iPhone and iPad apps that people use, which are almost exactly the same as the laminated card I once used. A friend of mine holds up her index fingers from each hand and says, “yes” and gestures with the one index finger, or “no” and then gestures with the other index finger. I remember being shocked that this simple method could produce accurate answers and yet it did. Obviously if there are profound physical issues, this may not be possible, so the laminated card might work better as one can position it so that a large range of physical movement will not be required.

“Having a voice after years of being ignored saves me from treacherous loss. Years of nothing, makes the smart ideas percolate. It is a strong force within, waiting for encouragement.” ~ Emma

There are people who would like to silence my daughter and those like her. One person recently accused me of “exploiting” my daughter to “satisfy your own vanity and craving for attention” by publishing things Emma’s said she wants others to read. This particular person went on to write (as though to Emma), “Autistic people are irrelevant in your mother’s world. And parenting is more of a competitive sport to her than a domestic responsibility. That is truly disgusting.” And yet if I do not publish the things my daughter writes and says she wants others to read and understand, then I become the silencer. I cannot presume her competent, but then selectively do so, by not publishing what she has asked to have published.

As with my older child, we have discussed, and continue to discuss at length the internet, the importance of realizing what one says on the internet, stays on the internet. We have discussed issues around human rights and advocacy. We are currently engaged in an ongoing discussion related specifically to blog writing because of the book we are reading, I am Malala in which Malala writes about being increasingly threatened and silenced by the Taliban and how her right to an education was taken from her simply because she was born female.

There are those who say that the words someone like my daughter writes are not really hers. This is a different way of silencing, but it is as equally brutal and effective. They say that because science has not shown RPM to be an easily replicated method it is therefore suspect. They say, parents like me are so determined to believe in their child’s intelligence and competence, we will go to any lengths to “believe” even when it’s clear (to them) our children cannot possibly be the competent beings we know they are. This is the opposite of presuming competence. They go on to suggest that though (in the case of RPM, where there is no physical contact of any kind) no one touches my daughter, those nearby are able to influence, so much so that they can actually force the person to point to letters, which spell out things they do not mean to write.

People like my daughter are in a perpetual state of limbo, a kind of no man’s land, neither here nor there. For those of us speaking out, writing about all of this, giving our children a platform from which to write, we are easy targets. There will always be people who disagree. There will always be people who are threatened by ideas that confront what they believe and have been told. There will always be people who viciously attack for reasons that may or may not be apparent to those they strike out at. I’ve been fortunate and have not had many who have attacked. In fact this recent commenter is the only one who has come after me, repeatedly, with such viciousness and undisguised hatred.

But I will not be silenced, nor will I allow my daughter to be; as long as she wants to be heard, I will do all I can to make sure she is.

*Emma chose this photograph to go along with her and my words. Yes, I read this to her, before publishing. And sadly, it seems, I must also state the obvious, I do not and will not publish anything ever, that she does not want me to publish. This blog will disappear the instant Emma tells me she wants it taken down.

This is what Emma wrote on the airplane coming home when we were delayed yet again. This was what she wrote after spending four hours waiting to board the aircraft, an aircraft that never took off, a plane that sat at the gate for another two hours waiting for the pilot to show up, an airplane that we then had to de-plane when that same pilot never arrived, forcing us to stand for two and a half hours in the airline’s customer care line, only to be told we would not be able to get home for three more days, oh and by the way, our luggage was nowhere to be found. Oops. Sorry. Shrug.

“Be patient with me…”

There were tears and a struggle to contain the overwhelming feelings of panic and exhaustion. Cries and fists that pummeled, teeth that bit, flailing limbs, and I was right there, wanting to do the same. Wanting to lash out. Wanting to scream and do something that would make it all go away. Change reality. Change these feelings. Change these circumstances. Scream. Disappear into the screams. Clench my jaw, grind my teeth, breathe, clench, grind, breathe, clench, grind, breathe…

“Be patient with me…”

“You’re impatient,” people have repeatedly observed and thought to tell me. Yeah. I know. That feeling that begins as mild anxiety, builds into an almost impossible feeling of discomfort… the feeling that if I don’t DO something, anything right now, I will die… that’s my impatience. I get that now, though I didn’t always. It used to be I didn’t know what those feelings were called, I just knew I would do just about anything to avoid them.

“Be patient…”

There’s an ongoing irony to parenting. How many times have I admonished my children to do the very thing I lack or am incapable of? I remember going to a parent/teacher conference at my son’s school. He was in grade school at the time and the teacher made a comment about how he needed to work on building his tolerance for frustration. I replied, “Yup, that’s something his mom’s still working on too.” The teacher looked at me with surprise.

“Be patient…”

I try. I am trying. But don’t use me as a model. I’m not very patient. I tend to be controlling too. I don’t like when things change suddenly, I feel calmer when I know what will happen next. I don’t love spontaneity, it messes with my sense of order. And once I’m in overwhelm, once the feelings are coming at me so quickly, I cannot access my thoughts, it doesn’t occur to me to say to the person I’m with, “Be patient with me…”

But my daughter did. My daughter was able to get in touch with what she needed from me during a time of heightened distress. So who was helping whom in that moment? Was I helping her or was she helping me?

I was asked recently to talk about the process that led to my daughter being able to write the insightful posts she’s been writing of late. And while I initially thought I HAD written about all of this and so much more throughout this blog, upon further reflection I realized I have not written about the process in a condensed form, so will attempt to do so now. (Wish me luck.) For those of you who are interested in a more detailed, chronological version of what we’ve been doing that has led to Emma writing posts like ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this’ and ‘this‘ for this blog (and to see the daily progress) you can enter terms such as, RPM, Halo, Soma, communication and non-speaking in the “search” box or just begin reading the posts starting in mid-September until now. For those of you who are REALLY curious, you can go back to October, 2012 when I went to the Autcom Conference.

There’s no way to say that on such and such date everything changed. Like so much in life it was the incremental, seemingly, not-so-important things that occurred one after the other that then allowed for the next thing and the next until there was that moment we remembered and now look back upon and say, “oh yes, that was when everything shifted.” Our version of having a – Helen Keller moment – the day when W-A-T-E-R suddenly made sense, didn’t happen. At least not like that. There wasn’t any ONE moment when it all changed, but more a series of moments one after the other that led to a number of “OH!” moments.

One of those “OH!” moments was when Emma went to see Soma Mukhopadhyay (I wrote about that session ‘here‘) and we sat with tears streaming down our cheeks because Emma knew how to spell October and that it was a month in Autumn. Another moment, previous to that, was when Emma was working with Pascal (documented ‘here‘) over a year ago. Pascal “asked Em what she would do if she went into her own bedroom and found baby bear in her bed, Em typed, “I would be scared and I would watch his mother.”

I read that sentence several times. How can I describe the feelings that came with reading it? How can I express the surge of hope I felt? How can I possibly describe the feeling of euphoria? This sentence, this idea was beyond what I have come to expect. It suggested a whole other level of thinking, a thought process far beyond anything she has been able to express before.”

In retrospect it seems incredible that all of this came as such a shock to us, but it did. As I’ve said before, we knew nothing. Literally. Nothing. But we thought we knew a great deal. We knew what we’d been told up until that point and then it seemed as though over night, we realized everything we thought we knew was wrong. So it was little moments just like these, over and over and over again, that continued to happen leading up to the first time I took Emma to see Soma in Texas (described in more detail ‘here‘, ‘here‘, ‘here‘ and ‘here‘) last September and then returning home and not being able to replicate what Soma was doing. But I was so determined and had to fight how depressed I felt because Emma seemed unable to write words that I’d just seen her write with Soma and yet with me, nothing. Nothing at all. There was self-doubt and fear, just tremendous fear that I wouldn’t be able to learn how to do this. Fear that I would never be able to communicate with my daughter in the way I witnessed her communicating with others like Soma and Rosie and Pascal and Harvey and Leah.

So I had to begin at the beginning with simple choices and felt so impatient and so worried that this was how it was going to be for the rest of our lives. But I kept showing up each day and making us do our “study room” together setting a timer for ten minutes and then 15 and then 20 and eventually up to 45 minutes and making lesson plans and wondering, wondering, always wondering whether she would be able to get to the point where she could trust me and write with me as I saw her writing with Soma.

I found a woman in NYC whom Soma had trained and we began taking Emma to see her too and I studied the videos of Soma working with Emma and I made notes and spent hours and hours pouring over them and making lesson plans and practicing. I wrote out scripts of exactly what I would say during our “study room” session, leaving nothing to chance and I kept at it. Finally, after what seemed like an eternity, but actually it was more like six weeks, I arranged to have a Skype call with Soma, having sent her a video of me working with Emma. Soma advised me to ask her one open ended question at the end of each lesson, which I hadn’t dared do as the one session I had, it was a disaster and she wouldn’t answer me. I said as much to Soma. I told her I didn’t think we were ready for that and Soma said, oh yes, but she’s ready. You must ask something simple at the end of each lesson. So I did. I did because Soma was so matter-of-fact and sure that this was what needed to happen next.

Emma began answering these open ended questions, at first with a few words and then with longer, more complex sentences. I began to ask clarifying questions and now… now look at her go! It makes me cry thinking about this actually. I couldn’t have known it would all happen as quickly as it did. At the time, the process seemed to take forever, but looking back one’s perspective is different and I see it as very fast and I’m just so grateful for all that work, for all those days I struggled and cried to my husband and didn’t believe it would ever be any other way…

By the way, I DO think those Helen Keller moments that Hollywood then immortalizes, has all of us very impatient and thinking life is like that. Of course you and I know, life isn’t so simple or easy, nothing ever is. There’s work, hard, hard work and hours upon hours of showing up over and over again, and then slowly change occurs and it seems incredible, even miraculous! But no one sees all that work, all those days when things didn’t go well, all those days when tempers flared, when there were tears and frustration and doubt and even disbelief that it would ever be different… until it is.

To all of you reading this – this has been my experience, as a parent, as someone who has always been terribly impatient, but determined. Emma’s experience has been different (I’m hoping she’ll want to write about that at some point.) Everyone’s experience will differ, but perhaps, just perhaps, my experience will be useful to those of you just beginning, or will bring a smile of recognition to those of you ahead of me, either way, none of us need do this alone. I didn’t and I am so grateful to all of you who have helped me help my daughter get to where she is now.

Last week I wrote a post, Speaking vs Typing, which sparked a terrific discussion about language, communication and how we interpret what others say and do. My friend Barb, who wrote (with Lois Prislovsky) the not-to-be-missed book, I might be you commented:

“my dear neurotypical friends, first, let me say i love that you all are putting your heads together to break down this truth into practical ideas to help me and my autistic peers who struggle mightily with spoken language communications. em is right, “language is an awkward way to communicate” and i argue that is true for everyone but highly challenging for those of us who are autistically wired in the “vanilla cake” or “mail truck” way that em and i are. it took me years to think in language. but prior to that my thinking was not faulty it was just not language based. thinking in language is not efficient for me. i wish i could give you a pretty little fact package about what works so folk like me could get such treatment and soar socially and academically. of course, the problem is…it is hard to say in language. typing makes it way easier, because i can control the speed of each thought and break it down to smaller parts to be better described by letters one peck at a time. speaking requires a rather unnatural process for me perhaps like you singing a song you heard in another language. u may be able to imitate the sounds but the meaning in each mimic is not precise. since most folk are not yet well practiced in telepathy the best way for me now is to communicate through typing. but still my thinking is not easily translated in to words. feelings, sensations, visions and perceptions that are cleanly processed in my mind dont fit well into letter symbols. there i said it – or something close. thanks for caring. trying b”

Barb’s comment made me wonder whether my daughter is able to “hear” my thoughts, even if just a little. And that if she were able to, it would make sense that either typing or speaking would feel like an inferior, less efficient form of communication, perhaps it would be viewed as somewhat barbaric, and certainly a less sophisticated way of communicating. So I asked her, “Can you hear my thoughts?” To which she answered, “No.” Not undone, I asked, “Do you feel them?” To which she did not reply. This post is not about mental telepathy, but is more about how we sense each other. Some of our senses we are taught to fine-tune and others society either doesn’t recognize or doesn’t place as much importance on.

But what if we lived in a culture that did encourage sensing another’s presence and feelings? What if, from the time we were born, our sense of other people’s state of mind, their feelings, was nurtured. Would that change how we communicated with each other? What if spoken language took a back seat to our intuition? What if we lived in a society that placed more importance on our presence, than on our words?

All of this reminded me of a conversation I had with a couple of friends, both of whom are Autistic, about disability and society’s role. I wrote a post about that, ‘here‘. One friend said that if we lived in a world where everyone used a variety of alternate forms of communication, where a longer time period was allowed and expected between words, and supports were anticipated and provided, then people who do not speak would not be considered disabled, just as I am not considered disabled because I cannot juggle or jump as high as an Olympic high jumper.

If children were taught at an early age to sense each other without relying on language, would we evolve into a species where language was viewed as unreliable and untrustworthy? Does my daughter view language as a lesser form of communication? Is she not as motivated to communicate, either through typing or verbally because her other senses are more finely tuned? Does motivation even enter into all of this? My brain is constantly looking for intent, motivation, but what if this isn’t what’s going on at all? What if this has nothing to do with any of that? What if she is trying so hard to communicate by typing and speaking because she understands I want her to, but not because she has the same need that I have? Does music call to her because it is less about the lyrics and more about the beauty of the music, the feelings the music evokes?

At an Autism Conference last month someone asked my daughter “Have you ever been to Australia?” Em immediately answered “Yes!” Yet when this person held up a laminated card with two boxes, one red with the word NO and the other box green with the word YES and asked the same question, Em promptly pointed to the red box with the word “NO”. When asked what she had for breakfast that morning, she answered, “Vanilla cake!” but when asked the same question and asked to respond by typing she wrote, “I ate cereal, toast and yogurt.”

Many people ask me why we are spending so much time and energy learning to support Emma’s typing. The most common two questions I’m asked regarding this are – why do you need to support her at all when she can use her two index fingers to type independently (I will write a separate post on that question) and why do you encourage her to type when she does and can speak?

Ironically I have yet to find accurate words to describe my daughter’s speech. I’ve said things like, “Her speech is unreliable” or “She can use language, but it often does not reflect what she really means to say” or “When she types we get a more accurate idea of what she intends to say, wants, or is thinking.” But I’m never sure people understand what I mean or if they do understand, whether it helps them when they try to talk to someone like Emma. (I have since met a great many people who have some language, but it is “unreliable” in that they will say things that are not necessarily the answer they mean or the words they meant to say.) Inaccurate speech is not because the person means to evade or is willfully not telling the truth, but is indicative of specific brain function. Lots of speech therapy, concentrating on spoken language, did not help Emma.

By the way verbal scripts serve as a default and come into play often in context to what is going on, but sometimes they are triggered by a detail. The script can appear to have nothing to do with the topic being discussed. For example we had an electrical storm the other night which reminds Emma of the fireworks on both New Year’s Eve and the Fourth of July. Emma calls both firework displays and electrical storms, “thunder fireworks.” She also calls rain storms and electrical storms, “firework bubbles” or “motorcycle bubbles”. But if you didn’t know any of this and were with her when it began to rain, you probably would not understand the association when she said, “Ohhh, look! It’s motorcycle bubbles!” and then pointed cheerfully out the window.

If I ask, “Em do you want to make vanilla cake?” Em will ecstatically respond, “Yes!” She happens to love nothing more than vanilla cake with vanilla frosting. I know this, no further questions are needed. However, if I ask her, “Em what did you eat for dinner last night?” She might respond with, “Vanilla cake!” or she might respond with what she actually ate. If I ask her why she was crying on the school bus, she might say, “You cannot scream! You cannot scream and bite on the bus. If you bite, no hitting!” or some other equally cryptic answer that does not answer the question of why, though it does give me a good idea of what was said to her and that she became so upset she began to bite herself.

However if I ask her to type her answer, she might type, “A boy was scratching my seat. I asked him to stop, but he kept scratching. He made me mad. The matron said, no kicking. Emma’s sad, Emma bit her arm. I don’t like that boy.” If pressed further, she will type his name and I will be able to tell the bus matron that Emma should not be seated near the boy whose name is X. Problem solved. The point is, when typing, Emma will write things she does not say. But to people who are unfamiliar with someone like this, they find it confusing.

When I showed Emma this photograph just now and asked, “what do you see?” She answered, “Good!” We went horseback riding while visiting my sister last week. And it was. It was “good!”

One of the things I love about having a blog are the conversations I get to have with people I would not feel courageous enough to approach and/or get to know. Tracy Thresher is one of those people. Tracy Thresher and Larry Bissonnette are the stars of Wretches and Jabberers, the documentary by Oscar Award winning and two-time Academy award-nominated filmmaker Gerardine Wurtzburg. Wretches and Jabberers follows two non-speaking Autistic men, (Tracy and Larry) as they travel the world, reaching out to other non-speaking Autistic people in an attempt to change public perceptions surrounding intelligence and autism.

“Leading man, Tracy” as he often jokingly refers to himself, is a terrific public speaker. I have seen him speak through typing many times now and each and every time I am riveted. It isn’t just the poetic way Tracy puts words together, it is his humanity, his humor, generosity, and ultimately, his tremendous compassion for this world and the people who inhabit it, that makes people sit up and listen to every word he taps out one painstaking letter at a time.

The following is a dialogue Tracy and I have been having for about seven months now. It has taken so long because of our schedules, but also because I could not stop asking more questions. Every time Tracy answered one question, I would have about ten more. Tracy was not only patient with me, but his kindness infiltrates his every response. As this conversation could go on and on, as far as I’m concerned, I thought I better post what we’ve been discussing thus far.

AZ: Tracy, how would you describe the documentary, Wretches and Jabberers that stars you and Larry Bissonnette?

TT: Our film catapulted me to realize my dream of traveling the world to educate, learn and change old attitudes of discrimination toward people of varying abilities. The Larry and Tracy duo illustrates how intelligence is often worked out in a much different way. Our journey takes us to places of enlightenment and our humanity, humor and intelligence comes shining through our typing. Our mission to spread the reality of our amazing intelligence through our typing is our way of promoting the Presumption of Competence dispelling myths. Our story is one that is a road trip for two friends who are in Larry’s words “more like you than not”.

AZ: “More like you than not” is such a wonderful description. So much of the literature surrounding autism is about the “deficits” of Autistic neurology compared to non Autistic neurology. Can you talk about the assets and the similarities?

TT: In my way of thinking, my experience initially was uncontrollable anger for the life I had trying to break through the misunderstanding in school. Kids can be brutally honest, reflecting the language that was the accepted norm in my childhood. Labeling kids is crippling. MR (mental retardation) on a diagnostic chart equates to NOT a candidate for the honor roll. Now I am able to communicate the reality of autism. I met Monk Hogen during the filming of “Wretches and Jabberers”, shining his wisdom on my autism. My true desire and purpose in life is breaking the walls of injustice down and my autism is the gift God gave me. I now focus on how I am connecting with all kinds of people through my work on the road. The high I feel in my own community is so wonderful, knowing that people want to know me. The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.

The anger on stage during my presentation in Japan was related to the lost opportunities in my education. I kept shouting out my automatics like “Look at me now! The kid you told one another to keep in isolation now is mentoring students which is healing salve to old wounds of injustice.” The other anger in Sri Lanka is more about the heat in the way it took my overly heated mix of perspiration soaking my clothing to extreme discomfort. Also, the popular foods in their culture are not in my comfort zone. Finland washed my anger, turning my heart to love of the climate. The cuisine helped too. Primarily, beautiful lands of countryside put my spirit at ease. Henna melted years of lost hope by crumbling away the feelings of isolating my heart to love.

People in the world often fear the paradox that autism usually presents. Larry and I mostly felt gracious vibes in our travels but the camera crew likely alters reality. To reflect on the cultural attitudes, the typing of my international friends is the true compass pointing to injustice.

AZ: For children who may be trying to cope with similar frustrations and anger, what do you suggest to them and their parents, teachers and therapists?

TT: This is my mission to show kids and their supports that putting communication to the top of their list of priorities is vitally cleansing to the mind. Releasing deep thoughts is the key to alleviating anxiety. Frustration leads the body to unproductive anger. Being able to show intelligent thought is the path to happier futures and true quality of life, leading to purpose. That is what I sought and found with typing.

AZ: Was there anything others might have done to help when you were overwhelmed with anger?

TT: Harvey and I have trust in our partnership. I need his firm yet kind support to stay on course with managing my autism. Harvey and I work well together. Typing is my outlet and open communication is the key. Long term shared goals helps to keep me on track. Harvey’s commitment to my communication is the big time dosing of calm energy that I need. The commitment to presuming competence is the major breeze of refreshing air to cooling anger.

AZ: You communicate by typing, but need someone to support your typing. Why is it necessary to have someone physically supporting you?

TT: Impulse to type out my most irritating automatics like going to radio stations or wcax news gets looping in my mind. Having good facilitators is helping me to slow my typing to think and connect to my inner thoughts. I also need high goal of working on fading physical support to be more independent and type with lessening support. Building trust is critical to fading.

AZ: What issues and resources do you feel are most important for a parent to be aware of when encouraging their child to self-advocate?

TT: I look up to pioneers in the FC world like Annie McDonald for her courage in the looking with the harshest disbelief on her typing. Rosie Crossley I also find gave me hope with her tell-it-like-she- sees-it firm approach. On a daily basis, the man of firm guidance is Harvey Lavoy. Harvey is my guru of staying focused. I would say he is my mentor of communication.

AZ: When and how did you begin typing?

TT: I was one lucky man to meet Alan Kurtz in 1990. Alan was motivated to unlock my wisdom. He treated me to intelligent conversation. Alan picked up on my eyes grazing on morsels of typing in magazines and the local paper. I was one of the first people in my Green Mountains of Vermont to be treated to this life changing mode of communication. I was 23. Alan unlocked years of pent up chaotic thoughts. My intelligence was masked by autistic looping of hurtful labeling.

Early Supports:

I had my job coach Donna. Donna was kind and gentle. I liked her. Her support for typing limited me to Kinney’s work. It takes time to build foundations of trust and to build connections. Alan presumed my competence. The feeling of being spoken to in an intelligent manner was exhilarating. My inner thoughts hid in my mind looking for light like trees needing to flourish. My true communication jumping out on thin strips of paper was like first steps, shaky building of freeing my mind.

AZ: Did you know you could write, but had nothing you could write on or with?

TT: I could put letters together in my mind to make them join to form words. It was my life to play with vocabulary in lonely times. I did not think too much about how I could put my thoughts out on paper. The labeling I heard made for pesky lapping up of my hope for sharing my thoughts.

AZ: How hard was it to start typing?

TT: The torch of my fiery need to have a communication partner passed from Alan to Harvey Lavoy. Looking into my dark deep chaos was like unlocking madness. I held many hard grudges toward a label of retardation. The looping replay was non-stop with no way to talk or vent to Mom or a friend. Using miserable behavior is release of the locking in of intelligence. I had lots of my pre-scripted looping thoughts coming through my typing; things like radio and my local news station WCAX. My inner thoughts got masked in too much of holding on to my autism. I did not know the term proprioception then. Lack of knowledge of my own body ticked me off. My movement looked like no control in the beginning. Harvey had many arm wrestling contests with me. Ha-ha.

AZ: Was it frustrating?

TT: Oh big time ticked off was my typing in my starting out with Harvey. I had my liking of typing with my days with Alan. Mighty communication got put to the derailed track when Alan moved to Maine. Harvey took my brutal frustration in stride. I was brewing with lots of anger. I worried I would lose my life line of typing.

AZ: Did you immediately feel motivated and liberated?

TT: I did feel the tangled web of thoughts trying to be set free. My body was like a tight coil pulling so anxiously; did not easily break free to allow for liberation. Harvey motivated me by talking to me about self-advocacy. I began to hope life would be mine to choose. Emerging from despair is hard work. The power of typing took my mind to freeing the grip of autism but it took lots of grueling typing sessions.

AZ: Were you resistant to typing at first?

TT: My body took over my logical mind many times. I often ran from the typing space out to the parking space trying to regulate. It did not help to be gulping Mountain Dew. My impulsive habits with food led me to not think with clarity. I needed much support from Harvey to stay in my typing space.

AZ: If yes, did anything help with the resistance?

TT: Placing high expectations on me truly is my need. Harvey looked me in the eye to insist that I decide my purpose in life. To be in control I needed to make big changes in my life. I had terrible grating on Mom’s nerves yelling to be rid of. Holistic life of Buddhism is my goal but I easily revert to junk food at times. Harvey leads me to mindfulness by pointing out hard truths to help me make thoughtful choices.

AZ: What did it feel like to be able to communicate in a way that people seemed to finally understand? Was it at all scary?

TT: Typing lifted my label of retard. Scary, it was not. More like “Take that!” I had begun my journey to change perceptions. It was like the locking in of my voice was over. I was giddy with hope.

AZ: Lots of people who watched Wretches and Jabberers have asked about your living situation. Do you mind answering the question so many continue to ask – What is your living situation right now?

TT: My Mom and Dad live near my week day home provider. I have my Wednesday family dinners. My mom is very involved in my life. I made the choice to leave my parents’ home to embark on my journey toward having a life of my own. It has been arduous at times but I have learned hard lessons toward life of my own making. Right now I live in one place Monday through Friday. I spend weekends with my family or with my weekend provider. I am working with my team on finding a place of my own.

In addition Tracy sent me a word document which he said I could share with all of you:

Many people have tried to help with my residential situation. I would like to clarify my search is plagued with difficulties of lack of knowledge in the way I would like to be supported. My family is my greatest place of stability but my idea of independence is having my own home to hang my hat, to set up in the way I choose. Mom has been there my entire life to help me on my path to being the independent thinker I want to be.

It is my time to search for the place I want to live that is both independent oriented but gives me the right thinking type of support I need. By that I mean it is necessary for me to have physical cues to get my body moving not bossy final answers made by others. My dream is to be in my own place where I make choices of the groceries I wish to buy; the decorative theme is of my choosing; the communication is open; the weekends’ activities fill my desire for exercise.

The most important thing is the commitment to learning how to support my typing. I have to let it be known that my family would never turn me from their home; this is my desire in my search for being in control of my life that I want to make for myself. I know my fans mean well to help in my residential search. For me it is more than a hook to hang my hat on; it is being in peace in my way of living where I make the house rules in cooperation with my like minded roommate.

For more on this blog about Tracy and Larry click ‘here‘, ‘here‘, ‘here‘ and ‘here‘.

This is a topic I would prefer not to discuss, but a few things happened recently that make it difficult not to write about this. So… here goes…

Facilitated communication has had a bumpy history. It began in the ’70’s and has been lurching along ever since. There have been studies done, both proving it’s validity and others proving it as an invalid method of aiding those who do not speak to communicate. This post is not about whether FC is valid. Those who do not believe in FC’s ability to help those who cannot speak will not be swayed by anything I write here. For those who are interested in reading more about FC and its history you can do so by reading this and this and the many links embedded in these posts.

What I will write about however, is all those FC users who have gone on to type independently. And here is where things get really interesting. Those same people who are convinced FC is all a mirage, a kind of non-speaking, Autistic version of an elaborate magic show, remain convinced the non-speaking person who now types independently is not really doing so. Those people continue to insist it is a “hoax” despite witnessing, some even after seeing in real life, a non-speaking person type on their own.

Just to be clear, I am not writing about hand over hand or a hand on a forearm assistance. I am writing about the many people who began typing with a facilitator, but who now type independently. By independently I am referring to those who may still need a trusted person standing nearby. Some type with another person’s hand placed on the middle of their back, others may need a hand gently placed on their shoulder. Yet these same people who speak out forcefully, often aggressively to any who dare write about someone who is non-speaking and writing of their experiences, say even a hand on the back proves these non-speakers cannot and do not type their own words. They insist that they are merely puppets doing the bidding of the person who is physically nearby.

What fascinates me about this is that these same people who insist it’s all a “hoax” (this is the word they usually use) would rather believe a person can move a seated, non-speaking person’s hand to hit specific keys on a keyboard by virtue of their physical presence, rather than entertain the notion that this non-speaking person, may in fact, be typing their own words. One such person commenting on a blog post about something unrelated to FC, but that had a link to Barb Rentenbach’s book, I Might Be You, wrote, ” I don’t consider typing with an arm on the shoulder independent typing. You can clearly see the facilitator nudging her towards the letters.” Not to quibble, but seriously? So this is like some sort of typed ventriloquism? Touch someone’s back and direct them to write thoughts that are not their own?

I urge any of you who believe this is possible to try doing it… place your hand on another’s shoulder or the middle of their back and see if you are able to control what that person then types. And while you’re at it, try standing next to the person and psychically urge them to write something. It seems incredible, but there are those who not only believe this to be the case, but they then demand “proof” that this person is typing independently, despite the fact that they’ve just been given the very “proof” they asked for. Evidently “proof” is subjective.

What bothers me about all of this is that those who are typing to communicate are doing so because they have no other means. This is not a “choice” that’s being made. The people who continue to insist they are a “hoax”, that it’s all a “mirage”, that they are being “controlled” are taking away the only way they can communicate. They are silencing them. They counter this assertion by saying that on the contrary, they are actually “advocating” for those who do not speak and are protecting those who are at the mercy of a facilitator who is putting words into another’s mouth. Yet, even when confronted with a non-speaking person’s typed words, typed without anyone’s hand on their arm, they continue to insist the very presence of this other person is all it takes. The transference of perceived power to cover up their dehumanization of another is convoluted.

If you google “Carly Fleischmann” the third entry that comes up is “Carly Fleischmann fake”. Sadly Carly is not alone when it comes to such beliefs. There is a long and horrible history of non-speaking people being discounted and effectively silenced by those who believe they cannot possibly be intelligent, insightful beings. There are those who will dismiss people like Carly as an anomaly, a “prodigy” and thereby ignore the years of effort it has taken her to get to where she now is, or they conclude she is a “fake”. There is nothing new about the silencing of human beings deemed inferior. (Read Inventing the Feeble Mind by James W. Trent, Jr.) The ingrained prejudices and dehumanization of Autistic people continues.

I want to end with one last thought, which is this – if you found yourself unable to speak, but could type to communicate, yet when you did so, people doubted the validity of your words, accused you of not actually writing what you’d so painstakingly typed, what would you do? How would you respond? How would you fight back? Could you fight back? Restraints come in many forms, but all are effective.

As Barb Rentenbach writes, “I might be you.” For those who doubt that sentence is her own, you better hope those words are wrong.

Barb types with Lois’s hand on her back as Emma twirls her string – April 2013